Congressional Record, Volume 152 Issue 106 (Thursday, August 3, 2006)

[Congressional Record Volume 152, Number 106 (Thursday, August 3, 2006)]
[Senate]
[Pages S8765-S8775]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

COMBATING AUTISM ACT OF 2005

Mr. SANTORUM. Mr. President, I understand the paper is in the process
of being delivered to the desk on S. 843, so while that is happening,
let me just make some remarks about the legislation.
The legislation that I am calling up on behalf of myself and Senator
Dodd and the two leaders who have been outstanding in helping us bring
this bill to the floor tonight is the Combating Autism Act. I know
Senator Enzi was just speaking, but I want to thank Senator Enzi and
Senator Kennedy also and the entire HELP Committee. If you want to talk
about a team effort, this has been a tremendous team effort, starting
initially with Senator Dodd and myself and our staffs who have just
done an outstanding job.
I thank particularly on my staff Jen Vessey, who has just put in--I
won't say hours of time but days of time, in working together along
with Senator Dodd's staff and then subsequently the entire committee
staff; in particular, Senators Enzi and Kennedy's staff, as well as, as
we brought this to the process, Senator Frist and Senator Reid.
This team was committed to getting this bill done and passed before
the August break. We had many bumps along the way, but tonight, with a
minor change in the bill, we are going to see this piece of legislation
pass and pass by unanimous consent.
I am very excited about all of the work that has been put in by the
entire autism community. I think, as Senator Dodd will attest, there
are very many arms of the autistic community, a lot of groups who have
a very wide variety of people with respect to how to deal with Federal
legislation regarding autism. But we were able to sit down and work
together over months of time.
I thank some people in particular who have worked outside of the
Congress, outside of the Halls of Congress: Bob and Suzanne Wright
deserve special recognition as grandparents of an autistic child for
their tremendous effort in pulling together these outside groups, along
with Deirdre Imus, who, again, devoted an extraordinary amount of time
and energy in bringing all of these disparate groups in the autism
community across the country together to work toward a common goal, and
that is to authorize an autism coordinator, authorize work and research
to be done at NIH that looks into all of the issues regarding autism,
including the causes of autism, how to best screen for autism, how to
best diagnose autism, and how to best treat autism.
It is one of the few disorders that I am aware of that is so
prevalent in America, and we have very few good answers on any one of
those issues. It creates enormous amounts of frustration for parents
and relatives and friends of children with autism that we just seem to
have no answers, and we see an ever-increasing population of autistic
children with fewer and fewer answers on how to diagnose, screen, test,
and treat these young children.
So tonight is a real landmark. It is a step forward for a community
that has been seeking someone to listen to them in Washington. It has
been a real honor to work with Senator Dodd. He has just been terrific,
including tonight, when we ran into a bump and he was able to smooth
that bump. We had one on our side. After lots of discussion, and thanks
to the leader and his work here, we were able to deal with that, and
now we are in a situation where we can move forward and pass this
important piece of legislation. I believe the paper work is now ready.
Mr. President, I ask unanimous consent that the Senate proceed to the
immediate consideration of Calendar No. 578, S. 843.
The PRESIDING OFFICER. The clerk will report the bill by title.
The assistant legislative clerk read as follows:

A bill (S. 843) to amend the Public Health Service Act to
combat autism through research, screening, intervention and
education.

There being no objection, the Senate proceeded to consider the bill
which was reported from the Committee on Health, Education, Labor and
Pensions with an amendment to strike all after the enacting clause and
insert in lieu thereof the following:

SECTION 1. SHORT TITLE.

This Act may be cited as the ``Combating Autism Act of
2006''.

SEC. 2. ACTIVITIES TO IMPROVE AUTISM-RELATED RESEARCH.

Section 409C of the Public Health Service Act (42 U.S.C.
284g) is amended to read as follows:

``SEC. 409C. AUTHORITY OF THE DIRECTOR OF THE NATIONAL
INSTITUTES OF HEALTH RELATING TO AUTISM.

[[Page S8766]]

``(ii) take into account the research recommendations of
the Interagency Autism Coordinating Committee under section
399CC; and
``(iii) using professional judgment, outline the proposed
budgetary requirements of the strategic plan, including
specific funding expectations for continued multi-year
program activities, as well as new and complementary program
activities, subject to the availability of appropriations;
and
``(B) may include investigator-initiated research.
``(3) Report.--Not later than April 1, 2008, and annually
thereafter, the Secretary, acting through the Director, shall
prepare and submit to the appropriate committees of Congress
a report that contains--
``(A) the strategic plan under paragraph (1) that will be
applicable to the upcoming fiscal year; and
``(B) a description of the actual dollar expenditures for
autism spectrum disorder during the previous fiscal year.
``(b) Expansion, Intensification, and Coordination of
Activities.--The Secretary, acting through the Director,
shall, subject to the availability of appropriations, expand,
intensify, and coordinate the activities of the National
Institutes of Health with respect to autism spectrum
disorder.
``(c) Centers of Excellence.--
``(1) Autism centers of excellence.--
``(A) In general.--The Secretary, acting through the
Director, shall, subject to the availability of
appropriations, award grants or contracts to public or
nonprofit private entities to assist such entities in paying
all or part of the costs of planning, establishing,
improving, and providing basic operating support for centers
of excellence concerning research on autism spectrum
disorder.
``(B) Research activities.--A center of excellence that
receives funding under this paragraph shall conduct basic and
clinical research into autism spectrum disorder. Such
research shall--
``(i) be conducted in the fields of developmental
neurobiology, genetics, epigenetics, pharmacology, nutrition,
immunology, neuroimmunology, neurobehavioral development,
endocrinology, gastroenterology, psychopharmacology, or
toxicology; and
``(ii) include investigations into the causation, diagnosis
or rule out, early detection, prevention, services, supports,
or intervention of autism spectrum disorder.
``(C) Services.--
``(i) In general.--A center of excellence that receives
funding under this paragraph may expend amounts provided
under a grant or contract under such paragraph to carry out a
program to make individuals aware of opportunities to
participate as subjects in research conducted by the center.
``(ii) Referrals and costs.--A program carried out under
clause (i) may, in accordance with such criteria as the
Director may establish, provide to the subjects described in
such clause, referrals for health and other services and
reimbursement of care for individuals as are required for
such research.
``(iii) Availability and access.--The extent to which a
center of excellence that receives funding under this
paragraph can demonstrate the availability of and access to
clinical services shall be considered by the Director in
making decisions concerning the awarding of grants or
contracts to applicants that meet the scientific criteria for
funding under this section.
``(D) Coordination of centers of excellence.--The Director
shall provide for the appropriate coordination of information
among centers of excellence that receive funding under this
paragraph and ensure regular communication between such
centers.
``(E) Organization.--A center of excellence that receives
funding under this paragraph shall use the facilities of a
single institution, or be formed through a consortium of
cooperating institutions, that meets such requirements as may
be required by the Director.
``(F) Duration.--The term of a grant or contract awarded
under this paragraph shall not exceed a period of 5 years.
Such period may be extended for 1 or more additional periods
not exceeding 5 years if the operations of the center of
excellence involved have been reviewed by an appropriate
technical and scientific peer review group established by the
Director and the group has recommended to the Director the
extension of such period.
``(G) Geographic diversity.--The Director shall consider
geographic diversity in awarding centers of excellence.
``(2) Centers of excellence in environmental health and
autism.--
``(A) In general.--The Director shall, subject to the
availability of appropriations, award grants or contracts to
public or nonprofit private entities to pay all or part of
the cost of planning, establishing, improving, and providing
basic operating support for centers of excellence regarding
environmental health and autism spectrum disorder.
``(B) Research.--A center of excellence established under
this paragraph shall conduct basic and clinical research of a
broad array of environmental factors that may have a possible
role in autism spectrum disorder.
``(C) Coordination and organization.--The Secretary, acting
through the Director of NIH, shall apply to the centers under
this paragraph the same requirements concerning coordination,
reporting, and organization as the requirements applied to
the centers of excellence under subparagraphs (D), (E), (F),
and (G) of paragraph (1).
``(d) Collection and Storage of Data.--
``(1) In general.--The Secretary, acting through the
Director and in coordination with the Director of the Centers
for Disease Control and Prevention, shall, subject to the
availability of appropriations, establish and provide funding
for mechanisms and entities that provide for the collection,
storage, coordination, and public availability of data that
is collected by the centers of excellence under this section,
under section 399AA(b), and under section 409C(c) and, to the
extent possible, data generated from public and private
research partnerships. In establishing such mechanisms and
entities, the Secretary--
``(A) shall ensure that there is data sharing among autism
spectrum disorder researchers; and
``(B) may utilize existing facilities.
``(2) Facilitation of research.--
``(A) Establishment of program.--The Secretary shall
establish a program under which samples of tissues and
genetic and other biological materials that are of use in
research on autism spectrum disorder are donated, collected,
preserved, and made available for such research.
``(B) Accepted scientific standards.--The program
established under paragraph (1) shall be--
``(i) carried out in accordance with accepted scientific
and medical standards for the donation, collection, and
preservation of such samples; and
``(ii) conducted so that the tissues and other materials
saved, as well as any database compiled from such tissues and
materials, are available to researchers at a reasonable cost
and on an expedited basis.
``(e) Consolidation.--The Secretary, acting through the
Director, may consolidate program activities under this
section if such consolidation would improve program
efficiencies and outcomes.
``(f) Authorization of Appropriations.--
``(1) In general.--There is authorized to be appropriated--
``(A) $68,000,000 for fiscal year 2007, $82,000,000 for
fiscal year 2008, $96,000,000 for fiscal year 2009,
$120,000,000 for fiscal year 2010, and $134,000,000 for
fiscal year 2011, to carry out subsections (a), (b), and (d);
``(B) $26,000,000 for fiscal year 2007, $32,500,000 for
fiscal year 2008, $39,000,000 for fiscal year 2009,
$45,500,000 for fiscal year 2010, and $52,000,000 for fiscal
year 2011, to carry out subsection (c)(1); and
``(C) $6,000,000 for fiscal year 2007, $7,500,000 for
fiscal year 2008, $9,000,000 for fiscal year 2009,
$10,500,000 for fiscal year 2010, and $12,000,000 for fiscal
year 2011, to carry out subsection (c)(2).
``(2) General usage.--Of the amounts appropriated under
subparagraphs (B) and (C) of paragraph (1), not to exceed 5
percent of such amounts may be utilized by the National
Institutes of Health for administrative and other expenses.
``(g) Sunset.--This section shall not apply after September
30, 2011.''.

SEC. 3. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH
PROGRAM.

(a) In General.--Title III of the Public Health Service Act
(42 U.S.C. 241 et seq.) is amended by adding at the end the
following:

``PART R--PROGRAMS RELATING TO AUTISM

``SEC. 399AA. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND
RESEARCH PROGRAM.

``(a) Autism Spectrum Disorder and Other Developmental
Disabilities.--
``(1) In general.--The Secretary, acting through the
Director of the Centers for Disease Control and Prevention,
may award grants or cooperative agreements to eligible
entities for the collection, analysis, and reporting of State
epidemiological data on autism spectrum disorder and other
developmental disabilities. An eligible entity shall assist
with the development and coordination of State autism
spectrum disorder and other developmental disability
surveillance efforts within a region. In making such awards,
the Secretary may provide direct technical assistance in lieu
of cash.
``(2) Data standards.--In submitting epidemiological data
to the Secretary pursuant to subsection (a), an eligible
entity shall report data according to guidelines prescribed
by the Director of the Centers for Disease Control and
Prevention, after consultation with relevant State and local
public health officials, private sector developmental
disability researchers, and advocates for individuals with
autism spectrum disorder or other developmental disabilities.
``(3) Eligibility.--To be eligible to receive an award
under paragraph (1), an entity shall be a public or nonprofit
private entity (including a health department of a State or a
political subdivision of a State, a university, or any other
educational institution), and submit to the Secretary an
application at such time, in such manner, and containing such
information as the Secretary may require.
``(b) Centers of Excellence in Autism Spectrum Disorder
Epidemiology.--
``(1) In general.--The Secretary, acting through the
Director of the Centers for Disease Control and Prevention,
shall, subject to the availability of appropriations, award
grants or cooperative agreements for the establishment of
regional centers of excellence in autism spectrum disorder
and other developmental disabilities epidemiology for the
purpose of collecting and analyzing information on the
number, incidence, correlates and causes of autism spectrum
disorder and other developmental disabilities.
``(2) Requirements.--To be eligible to receive a grant or
cooperative agreement under paragraph (1), an entity shall
submit to the Secretary an application containing such
agreements and information as the Secretary may require,
including an agreement that the center to be established
under the grant or cooperative agreement shall operate in
accordance with the following:

[[Page S8767]]

``(A) The center will collect, analyze, and report autism
spectrum disorder and other developmental disability data
according to guidelines prescribed by the Director of the
Centers for Disease Control and Prevention, after
consultation with relevant State and local public health
officials, private sector developmental disability
researchers, and advocates for individuals with developmental
disabilities.
``(B) The center will develop or extend an area of special
research expertise (including genetics, epigenetics,
epidemiological research related to environmental exposures),
immunology, and other relevant research specialty areas.
``(C) The center will identify eligible cases and controls
through its surveillance system and conduct research into
factors which may cause or increase the risk of autism
spectrum disorder and other developmental disabilities.
``(c) Federal Response.--The Secretary shall coordinate the
Federal response to requests for assistance from State
health, mental health, and education department officials
regarding potential or alleged autism spectrum disorder or
developmental disability clusters.
``(d) Definitions.--In this part:
``(1) Other developmental disabilities.--The term `other
developmental disabilities' has the meaning given the term
`developmental disability' in section 102(8) of the
Developmental Disabilities Assistance and Bill of Rights Act
of 2000 (42 U.S.C. 15002(8)).
``(2) State.--The term `State' means each of the several
States, the District of Columbia, the Commonwealth of Puerto
Rico, American Samoa, Guam, the Commonwealth of the Northern
Mariana Islands, the Virgin Islands, and the Trust Territory
of the Pacific Islands.
``(e) Authorization of Appropriations.--To carry out this
section, there is authorized to be appropriated, $15,000,000
for fiscal year 2007, and such sums as may be necessary for
each of fiscal years 2008 through 2011.
``(f) Sunset.--This section shall not apply after September
30, 2011.

``SEC. 399BB. AUTISM EDUCATION, EARLY DETECTION, AND
INTERVENTION .

``(a) Purpose.--It is the purpose of this section--
``(1) to increase awareness, reduce barriers to screening
and diagnosis, promote evidence-based interventions for
individuals with autism spectrum disorder or other
developmental disabilities, and train professionals to
utilize valid and reliable screening tools to diagnose or
rule out and provide evidence-based interventions for
children with autism spectrum disorder and other
developmental disabilities; and
``(2) to conduct activities under this section with a focus
on an interdisciplinary approach (as defined in programs
developed under section 501(a)(2) of the Social Security Act)
that will also focus on specific issues for children who are
not receiving an early diagnosis and subsequent
interventions.
``(b) In General.--The Secretary shall, subject to the
availability of appropriations, establish and evaluate
activities to--
``(1) provide information and education on autism spectrum
disorder and other developmental disabilities to increase
public awareness of developmental milestones;
``(2) promote research into the development and validation
of reliable screening tools for autism spectrum disorder and
other developmental disabilities and disseminate information
regarding those screening tools;
``(3) promote early screening of individuals at higher risk
for autism spectrum disorder and other developmental
disabilities as early as practicable, given evidence-based
screening techniques and interventions;
``(4) increase the number of individuals who are able to
confirm or rule out a diagnosis of autism spectrum disorder
and other developmental disabilities;
``(5) increase the number of individuals able to provide
evidence-based interventions for individuals diagnosed with
autism spectrum disorder or other developmental disabilities;
and
``(6) promote the use of evidence-based interventions for
individuals at higher risk for autism spectrum disorder and
other developmental disabilities as early as practicable.
``(c) Information and Education.--
``(1) In general.--In carrying out subsection (b)(1), the
Secretary, in collaboration with the Secretary of Education
and the Secretary of Agriculture, shall, subject to the
availability of appropriations, provide culturally competent
information regarding autism spectrum disorder and other
developmental disabilities, risk factors, characteristics,
identification, diagnosis or rule out, and evidence-based
interventions to meet the needs of individuals with autism
spectrum disorder or other developmental disabilities and
their families through--
``(A) Federal programs, including--
``(i) the Head Start program;
``(ii) the Early Start program;
``(iii) the Healthy Start program;
``(iv) programs under the Child Care and Development Block
Grant Act of 1990;
``(v) programs under title XIX of the Social Security Act
(particularly the Medicaid Early and Periodic Screening,
Diagnosis and Treatment Program);
``(vi) the program under title XXI of the Social Security
Act (the State Children's Health Insurance Program);
``(vii) the program under title V of the Social Security
Act (Maternal and Child Health Block Grant Program);
``(viii) the program under parts B and C of the Individuals
with Disabilities Education Act;
``(ix) the special supplemental nutrition program for
women, infants, and children established under section 17 of
the Child Nutrition Act of 1966 (42 U.S.C. 1786); and
``(x) the State grant program under the Rehabilitation Act
of 1973.
``(B) State licensed child care facilities; and
``(C) other community-based organizations or points of
entry for individuals with autism spectrum disorder and other
developmental disabilities to receive services.
``(2) Lead agency.--
``(A) Designation.--The governor of a State shall designate
a public agency as a lead agency to coordinate the activities
provided for under paragraph (1) in the State at the State
level.
``(B) Information.--The Governor or a State, acting through
the lead agency under subparagraph (A), shall make available
to individuals and their family members, guardians,
advocates, or authorized representatives, providers, and
other appropriate individuals in the State, comprehensive
culturally competent information about State and local
resources regarding autism spectrum disorder and other
developmental disabilities, risk factors, characteristics,
identification, diagnosis or rule out, available services and
supports, and evidence-based interventions. Such information
shall be provided through--
``(i) toll-free telephone numbers;
``(ii) Internet websites;
``(iii) mailings; or
``(iv) other means as the Governor may require.
``(C) Requirements of agency.--In designating the lead
agency under subparagraph (A), the Governor shall--
``(i) select an agency that has demonstrated experience and
expertise in--

``(I) autism spectrum disorder and other developmental
disability issues; and
``(II) developing, implementing, conducting, and
administering programs and delivering education, information,
and referral services (including technology-based curriculum-
development services) to individuals with developmental
disabilities and their family members, guardians, advocates
or authorized representatives, providers, and other
appropriate individuals locally and across the State; and

``(ii) consider input from individuals with developmental
disabilities and their family members, guardians, advocates
or authorized representatives, providers, and other
appropriate individuals.
``(d) Tools.--
``(1) In general.--To promote the use of valid and reliable
screening tools for autism spectrum disorder and other
developmental disabilities, the Secretary shall develop a
curriculum for continuing education to assist individuals in
recognizing the need for valid and reliable screening tools
and the use of such tools.
``(2) Collection, storage, coordination, and
availability.--The Secretary, in collaboration with the
Secretary of Education, shall provide for the collection,
storage, coordination, and public availability of tools
described in paragraph (1), educational materials and other
products that are used by the Federal programs referred to in
subsection (c)(1)(A), as well as--
``(A) programs authorized under the Developmental
Disabilities Assistance and Bill of Rights Act of 2000;
``(B) early intervention programs or interagency
coordinating council's authorized under part C of the
Individuals with Disabilities Education Act; and
``(C) children with special health care needs programs
authorized under title V of the Social Security Act.
``(3) Required sharing.--In establishing mechanisms and
entities under this subsection, the Secretary, and the
Secretary of Education, shall ensure the sharing of tools,
materials, and products developed under this subsection among
entities receiving funding under this section.
``(e) Diagnosis.--
``(1) Training.--The Secretary, in coordination with
activities conducted under title V of the Social Security
Act, shall, subject to the availability of appropriations,
expand existing interdisciplinary training opportunities or
opportunities to increase the number of sites able to
diagnose or rule out individuals with autism spectrum
disorder or other developmental disabilities and ensure
that--
``(A) competitive grants or cooperative agreements are
awarded to public or non-profit agencies, including
institutions of higher education, to expanding existing or
develop new maternal and child health interdisciplinary
leadership education in neurodevelopmental and related
disabilities programs (similar to the programs developed
under section 501(a)(2) of the Social Security Act) in States
that do not have such a program;
``(B) trainees under such training programs--
``(i) receive an appropriate balance of academic, clinical,
and community opportunities;
``(ii) are culturally competent;
``(iii) are ethnically diverse;
``(iv) demonstrate a capacity to evaluate, diagnose or rule
out, develop, and provide evidence-based interventions to
individuals with autism spectrum disorder and other
developmental disabilities; and
``(v) demonstrate an ability to use a family-centered
approach; and
``(C) program sites provide culturally competent services.
``(2) Technical assistance.--The Secretary may award one or
more grants under this section to provide technical
assistance to the network of interdisciplinary training
programs.
``(3) Best practices.--The Secretary shall promote research
into additional valid and reliable tools for shortening the
time required to confirm or rule out a diagnosis of autism
spectrum disorder or other developmental disabilities and
detecting individuals with autism spectrum disorder or other
developmental disabilities at an earlier age.
``(f) Intervention.--The Secretary shall promote research,
through grants or contracts, to determine the evidence-based
practices for interventions for individuals with autism
spectrum disorder or other developmental disabilities,
develop guidelines for those interventions, and disseminate
information related to such research and guidelines.

[[Page S8768]]

``(g) Authorization of Appropriations.--To carry out this
section, there is authorized to be appropriated, $32,000,000
for fiscal year 2007, $37,000,000 for fiscal year 2008,
$42,000,000 for fiscal year 2009, $47,000,000 for fiscal year
2010, and $52,000,000 for fiscal year 2011, of which--
``(1) $5,000,000 shall be made available in each fiscal
year for activities described in subsection (c); and
``(2) $3,000,000 shall be made available in fiscal year
2007, $6,000,000 in fiscal year 2008, $9,000,000 in fiscal
year 2009, $12,000,000 in fiscal year 2010, and $15,000,000
in fiscal year 2011, for activities described in subsection
(f).
``(h) Sunset.--This section shall not apply after September
30, 2011.

``SEC. 399CC. INTERAGENCY AUTISM COORDINATING COMMITTEE.

``(a) Establishment.--The Secretary shall establish a
committee, to be known as the `Interagency Autism
Coordinating Committee' (in this section referred to as the
`Committee'), to coordinate all efforts within the Department
of Health and Human Services concerning autism spectrum
disorder.
``(b) Responsibilities.--In carrying out its duties under
this section, the Committee shall--
``(1) make recommendations concerning the strategic plan
described in section 409C(a);
``(2) develop and annually update advances in autism
spectrum disorder research related to causes, early
screening, diagnosis or rule out, intervention, and access to
services and supports for individuals with autism spectrum
disorder; and
``(3) make recommendations to the Secretary regarding the
public participation in decisions relating to autism spectrum
disorder.
``(c) Membership.--
``(1) In general.--The Committee shall be composed of--
``(A) the Director of the Centers for Disease Control and
Prevention;
``(B) the Director of the National Institutes of Health,
and the Directors of such national research institutes of the
National Institutes of Health as the Secretary determines
appropriate;
``(C) the heads of such other agencies as the Secretary
determines appropriate;
``(D) representatives of other Federal Governmental
agencies that serve individuals with autism spectrum disorder
such as the Department of Education; and
``(E) the additional members appointed under paragraph (2).
``(2) Additional members.--Not fewer than 6 members of the
Committee, or 1/3 of the total membership of the Committee,
whichever is greater, shall be composed of non-federal public
members to be appointed by the Secretary, of which--
``(A) at least one such member shall be an individual with
a diagnosis of autism spectrum disorder;
``(B) at least one such member shall be a parent or legal
guardian of an individual with an autism spectrum disorder;
and
``(C) at least one such member shall be a representative of
leading research, advocacy, and service organizations for
individuals with autism spectrum disorder.
``(d) Administrative Support; Terms of Service; Other
Provisions.--The following provisions shall apply with
respect to the Committee:
``(1) The Committee shall receive necessary and appropriate
administrative support from the Secretary.
``(2) Members of the Committee appointed under subsection
(c)(2) shall serve for a term of 4 years, and may be
reappointed for one or more additional 4 year term. Any
member appointed to fill a vacancy for an unexpired term
shall be appointed for the remainder of such term. A member
may serve after the expiration of the member's term until a
successor has taken office.
``(3) The Committee shall meet at the call of the
chairperson or upon the request of the Secretary. The
Committee shall meet not fewer than 2 times each year.
``(4) All meetings of the Committee shall be public and
shall include appropriate time periods for questions and
presentations by the public.
``(e) Compensation and Expenses.--Members of the Committee
who are officers or employees of the Federal Government shall
serve as members of the Committee without compensation in
addition to that received in their regular government
employment. Other members of the Committee shall receive
compensation at rates not to exceed the daily equivalent of
the annual rate in effect for grade GS-18 of the General
Schedule for each day (including travel time) they are
engaged in the performance of their duties as members of the
Committee.
``(f) Subcommittees; Establishment and Membership.--In
carrying out its functions, the Committee may establish
subcommittees and convene workshops and conferences. Such
subcommittees shall be composed of Committee members and may
hold such meetings as are necessary to enable the
subcommittees to carry out their duties.
``(g) Authorization of Appropriations.--To carry out this
section, there is authorized to be appropriated, such sums as
may be necessary for each of fiscal years 2007 through 2011.
``(h) Sunset.--This section shall not apply after September
30, 2011 and the Committee shall be terminated on such date.

``SEC. 399DD. REPORT TO CONGRESS.

``(a) In General.--Not later than 4 years after the date of
enactment of the Combating Autism Act of 2006, the Secretary,
in coordination with the Secretary of Education, shall
prepare and submit to the Health, Education, Labor, and
Pensions Committee of the Senate and the Energy and Commerce
Committee of the House of Representatives a progress report
on activities related to autism spectrum disorder and other
developmental disabilities.
``(b) Contents.--The report submitted under subsection (a)
shall contain--
``(1) a description of the progress made in implementing
the provisions of the Combating Autism Act of 2006;
``(2) a description of the amounts expended on the
implementation of the particular provisions of Combating
Autism Act of 2006;
``(3) information on the incidence of autism spectrum
disorder and trend data of such incidence since the date of
enactment of the Combating Autism Act of 2006;
``(4) information on the average age of diagnosis for
children with autism spectrum disorder and other
disabilities, including how that age may have changed over
the 4-year period beginning on the date of enactment of this
Act;
``(5) information on the average age for intervention for
individuals diagnosed with autism spectrum disorder and other
developmental disabilities, including how that age may have
changed over the 4-year period beginning on the date of
enactment of this Act;
``(6) information on the average time between initial
screening and then diagnosis or rule out for individuals with
autism spectrum disorder or other developmental disabilities,
as well as information on the average time between diagnosis
and evidence-based intervention for individuals with autism
spectrum disorder or other developmental disabilities;
``(7) information on the effectiveness and outcomes of
interventions for individuals diagnosed with autism spectrum
disorder, including by various subtypes, and other
developmental disabilities and how the age of the child may
affect such effectiveness;
``(8) information on the effectiveness and outcomes of
innovative and newly developed intervention strategies for
individuals with autism spectrum disorder or other
developmental disabilities; and
``(9) information on services and supports provided to
individuals with autism spectrum disorder and other
developmental disabilities who have reached the age of
majority (as defined for purposes of section 615(m) of the
Individuals with Disabilities Education Act (20 U.S.C.
1415(m)).''.
(b) Repeals.--The following sections of the Children's
Health Act of 2000 (Public Law 106-310) are repealed:
(1) Section 101 (42 U.S.C. 247b-4a) relating to research
activities at the National Institutes of Health.
(2) Section 102 (42 U.S.C. 247b-4b) relating to the
Developmental Disabilities Surveillance and Research Program.
(3) Section 103 (42 U.S.C. 247b-4c) relating to information
and education.
(4) Section 104 (42 U.S.C. 247b-4d) relating to the Inter-
Agency Autism Coordinating Committee.
(5) Section 105 (42 U.S.C. 247b-4e) relating to reports.
Mr. SANTORUM. Mr. President, before I offer the amendment, if Senator
Dodd would like to take a few minutes to speak.
Mr. DODD. Mr. President, I will be very brief. The majority leader is
here, and my friend from Pennsylvania has very adequately--more than
adequately--described the history of this legislation. It has been a
journey of some time here to bring this legislation to the point we are
this evening, to the final adoption unanimously by this body. I am very
grateful, as well, to the chairman of our committee, Mike Enzi, who has
been tremendously helpful, along with Senator Kennedy and other members
of the committee who voted unanimously to report this bill out on a
bipartisan basis.
As the Senator from Pennsylvania has pointed out, the majority leader
and minority leader have been tremendously helpful, along with the
majority and minority leader staffs who have helped us on the Senate
floor work through some final little knots on this bill that had to be
worked out before we could bring this bill to the consideration of the
full body.
There are some very special people who worked very hard. The autism
community is a large community. It is a diverse one. There are many
points of view that have been represented by various people. It has
been critically important that there has been an effort to come
together. They have done that in part because of the leadership of Bob
and Suzanne Wright, who played a very instrumental role, who are
grandparents of an autistic child and who work tirelessly with the
organization they helped found, Autism Speaks. Senator Santorum also
mentioned Deirdre Imus, a constituent of mine in Connecticut, who is
tenacious in her commitment to issues she gets involved in and has
certainly been tenacious on this one. If there were one individual
outside of the Members and staff of this body who worked so hard on
this, she probably deserves it more than anyone for keeping the flame
burning on this effort on behalf on the autism community.
Mr. President, 1 out of every 166 children in this country are born
with autism spectrum disorder. It is a growing

[[Page S8769]]

problem, Mr. President. The problem has increased in my own State of
Connecticut by close to 1,100 percent since 1993. We don't know exactly
what causes this. But this bill will allow us to examine all
questions--and I mean every question--arising of what may be provoking
this rapid increase in autism. Clearly, our diagnosis, diagnostic
efforts, are better today. But that doesn't explain to most of us why
the dramatic increases have occurred.
So we believe there may be other reasons out there that deserve full
examination and exploration. Certainly, looking at ways to treat this
issue is also critically important, how to support these families who
have an autistic child. There is a tremendous amount of pressure on
families who are confronted with this issue. They handle it very well,
and many of these families will tell you that while one may look at it
from afar as a disability, in many cases you will be amazed how many
view it as somehow a blessing in a way. I know that sounds strange to
many of my colleagues to hear this, but for families with autistic
children, it is difficult, but it is impressive to see how well they
handle this. It is inspirational to watch how many families deal with
this issue.
So tonight is a special night. It is late. We have major bills we
have just passed on pension reform, and we are not suggesting this bill
is more important than that bill in significance, but I want to tell
you something. To an awful lot of families out there tonight who don't
know anything about this late hour or what has happened here earlier,
we are making a difference in their lives, and we may make a huge
difference down the road in the lives of future children and families
because we may get to the cause of this and make a difference in trying
to stem the reach of autism spectrum disorder.
So I am deeply proud we have been involved. We hope we can get, of
course, this bill signed into law fairly quickly. But, again, I thank
my colleagues. I thank, particularly, Senator Santorum, who has been
terrific on this issue and who has been a chief sponsor with me, along
with the other Members whom I have mentioned.
In conclusion, hundreds of thousands of families across America
struggle each and every day with autism spectrum disorder, ASD, one of
the fastest- growing developmental disabilities in the United States.
While we used to think of ASD as relatively rare, today it is diagnosed
at a rate that is 10 times that of a decade ago. In my home State of
Connecticut, we have witnessed an increase in diagnoses of ASD of close
to 1,100 percent since 1993. What these numbers tell us is that ASD
diagnoses are rising at truly alarming rates and we simply must provide
more answers to all those affected by this devastating condition. As a
nation, we need to support the families that are struggling to raise a
child with ASD.
There are many theories as to why the prevalence of ASD has
increased. Some have suggested that it is a reflection of better
diagnostic tools and measures. Other theories focus on genetic or
environmental factors. But the fact is that when it comes to autism
spectrum disorder we just don't know for certain what causes it, we
don't know exactly how to diagnose it, and we don't know how best to
intervene so that individuals with ASD can achieve their highest
potential. It is absolutely vital that we do more for families
struggling with this disorder, which is why the Combating Autism Act is
so important.
ASD affects as many as 6 out of every 1,000 children, and the
economic cost to this country due to autism spectrum disorder is
staggering. Healthcare for individuals with ASD over their lifetimes
costs an estimated $35 billion per year. Schooling alone can cost as
much as $100,000 each year. By 2015, the annual cost of care will be
about $300 billion, but we know that this figure can be cut in half
with early diagnosis, services, and intervention. As many as 40 percent
of new ASD cases are identified in our schools each year, and a child
is likely to be nearing his or her 10th birthday before a diagnosis is
made. This means that interventions and services that could help these
children achieve their full potential are not made available to them
during the critical period of early development when interventions are
most successful and cost-effective. As a country, we need to do a
better job of diagnosing children before they start school. That means
training pediatricians, early childhood educators, and day care
providers to recognize the early indicators of ASD so that at-risk
children are referred to specialists for diagnosis and services as
early as practicable.
The Combating Autism Act will promote early detection, early
evidence-based interventions, and services for individuals with ASD. It
also significantly increases our investment in the National Institutes
of Health for autism-related research. This legislation will also
reauthorize the epidemiologic surveillance programs at the Centers for
Disease Control and Prevention. Most importantly, this legislation will
mean answers for the families that have been so deeply affected by ASD.
For that reason, more than any other, I am grateful that the Senate is
voting to pass the Combating Autism Act today.
I want to thank my colleagues, Senator Santorum, Senator Enzi,
Senator Kennedy, and their staffs for their extraordinary hard work on
this bill. I also wish to offer my sincere thanks and appreciation to
all of the individuals who are personally affected by autism spectrum
disorder--and the many advocacy groups who represent them--for their
continued dedication and passionate commitment to this legislation.
Without their commitment, we would not be here today on the verge of
Senate passage of this critical legislation that will greatly advance
our Nation's efforts to address the many issues surrounding autism
spectrum disorder and to serve those per * * *
The PRESIDING OFFICER. The majority leader is recognized.
Mr. FRIST. Mr. President, before we move to pass this bill, I, too,
want to add my commendation, my thanks, my appreciation, my gratitude
to Senator Santorum and Senator Dodd. I have had the opportunity to
work almost daily with Senator Santorum on this particular issue and
because of his focus and his dedication and hard work, indeed, at 11:15
tonight, we do have a reason to celebrate--celebrate not just for the
bill itself but because it is a major step forward for the hundreds and
thousands of families across this Nation who are exposed to, are
touched by, who celebrate autism, and that this bill itself recognizes
we have a long way to go.
It was a year ago that I asked the Government Accountability Office
to look at and evaluate our country's efforts to combat autism and to
look at the challenges that we have before us. It was 6 years ago that
Senator Kennedy and I cosponsored a bill, the Children's Health Act of
2000. The report was released today, the General Accounting Office
report. It states that while Federal funding coordination and research
have increased since the Children's Health Act of 2000, there is a
significant need for more coordination, for expanded research, for
better strategies for education, and indeed for more health care
professionals to serve the autism community.
If you wrap all of that up, there is a need for better research,
diagnosis, and treatment. And there is a need for a cure.
On the Senate floor we will talk about that need, but it is parents
like Brian and Tracy Noll who feel it every day. Brian and Tracy are
parents, actually Pennsylvanian parents--referring to my distinguished
colleague, the sponsor of this bill--of a 7-year-old son with autism.
As an infant, their son Tyler exhibited--this is the usual course--all
the normal signs of a healthy baby, a happy baby. But at 18 months
Brian started to notice that Tyler would no longer look him in the eye.
Again, as is the custom, after repeated visits to doctors, repeated
visits, there was a lot of mystery initially. He was ultimately
diagnosed with autism at the age of 3. Today Tyler struggles with
communication and coordination, his language and sensory skills are
limited. He knows, yes, that he is different from other children, but
he really can't understand why. Brian and Tracy see their fun-loving
son whose smile lights up the room and they hope for new treatments
that will help him lead a normal and productive life. They hope
researchers will help cure autism, and, yes, they hope

[[Page S8770]]

someday we will understand why. Because of the tremendous work of
Senators Santorum and Dodd, under the chairmanship of Chairman Enzi and
Chairman Kennedy--who I mentioned back from our work together in 2006--
we are on the way to that becoming a reality.
It is one of the least understood developmental disorders of our
time. The difficulties with communication skills and social skills are
well known. But no case is the same. Every case is a little bit
different. It covers, as its name suggests, a spectrum of behaviors.
Approximately 40 percent of children with autism do not talk. Others
will learn to talk but later stop speaking altogether. Some read at an
advanced pace. Some have unique athletic abilities. Some will exhibit
excellent fine motor skills but will have a great deal of difficulty
with the more simple tasks before them.
I think back to 30 years ago when I graduated from medical school:
Autism was little talked about as a disorder. But over the next three
decades we have watched its incidence steadily grow. That is why, as I
mentioned, in the year 2000, Senator Kennedy and I were compelled to
introduce that Children's Health Care Act. The intent was for America
to better understand and treat and one day prevent a disorder that had
for so long eluded the scientific community as well as the medical and
clinical community.
As the GAO report released today highlights, coordination of Federal
autism activities in NIH research has increased. Indeed, NIH funding
has doubled between 2000 and today. Yet, for as many strides as we made
in the last 5 years, one fact remains: There is no cure. We shed more
light on autism, but we are still at the very dawn of understanding the
disorder and its origins.
As a physician I have witnessed firsthand the power of research--if
we invest, if we set up a framework for the appropriate research. And
with reason, I harbor hope for a day when autism has a cure.
But that day depends on this body making a commitment.
We have laid a foundation. But today we have an opportunity to build
on it by passing the Combating Autism Act, which not only reauthorizes
The Children's Health Act of 2000--it addresses the specific challenges
laid out in the GAO report. The GAO report highlights that we need
greater coordination of Federal autism activities, and this bill
ensures it. The report states that surveillance of autism can be
improved through better coordination--and this bill ensures it. The
report identifies the need for more health care professionals who are
trained to interact with autism patients--and this bill ensures it. The
report makes clear that because there is no cure and no known cause,
research must be continued, and it must be expanded. And this bill
ensures it.
For the parents of children with autism, there is so little
certainty. There is no guarantee when they wake up in the morning that
it will be a good day for their child. There is no guarantee that their
child will learn to talk or to read or interact with his peers. And
there is no certainty what the future holds for that child who will one
day be an adult.
Today is an opportunity to provide those parents with what little
certainty we can.
Today is the opportunity to assure them that we are continuing to
push forward for better treatment, for more research, for a greater
understanding, and one day, perhaps a cure.
I thank my colleagues Senators Santorum and Dodd for sponsoring this
legislation.
And I am pleased we have passed this important bill.
What we are about to do is a great victory for this body, for the
country, and indeed for the parents of children with autism. I am
pleased in a few moments we will pass this very important deal.
Both of my colleagues have previously mentioned their relationship
with others who have autism. Again, Bob and Susan Wright have been
tremendous leaders in their communities, across the country, and indeed
globally in fighting autism. A good friend, Phil Geier, who they know
very well, a close friend of mine, has been instrumental in shedding
that communication, that light on this entity. We can all celebrate
today that, because of all their hard work and the leadership of
Chairman Enzi, we will be passing that bill shortly.
The PRESIDING OFFICER. The Senator from Illinois.
Mr. DURBIN. Mr. President, I salute the source of this effort for
their hard work, Senator Santorum, Senator Dodd, and many others, and
ask unanimous consent my name be added as a cosponsor.
The PRESIDING OFFICER. Without objection, it is so ordered.
The Senator from Wyoming.
Mr. ENZI. Mr. President, I want to take a moment to add my
congratulations to the people who have had a key role in doing this
bill. First of all, I want to recognize the leader, who always inspires
us on a lot of these issues and then provides the time for us to be
able to do it as well--not only on this but on the pensions bill. He
has to handle a lot of strategy and a lot of different personalities
and does just a marvelous job moving the whole body along.
I primarily want to thank Senator Dodd and Senator Santorum for
bringing this to our committee and working it diligently. I also thank
them for sending all the different people to see me who had an interest
in this bill, who had a number of different likes and wants and needs.
They are to be commended for the tremendous effort they put into making
sure that some day we have a solution to autism.
It is the most diligent-working bunch of people I think I have ever
been associated with. They are also at the very beginning of a process,
it seems. We need to expedite that process. This bill will help to get
that done.
Senator Santorum has just been a real leader on this issue and
probably understands it better than anybody that I have worked with and
has worked through all the difficulties of the last-minute kinds of
changes.
I thank all of you for getting this for America. One of the things
this bill does is help people understand autism better. It is
relatively unknown. This elevates it. As we continue to do that, we
will get solutions. I thank all of you for doing that.
The PRESIDING OFFICER. The Senator from Pennsylvania.
Mr. SANTORUM. Mr. President, I thank Senator Enzi for just the
tremendous commitment that he and Senator Kennedy made to being patient
and working through the months of time it took to bring this bill
together.
I know his intention was to move a comprehensive reform of the NIH,
and he made an exception for this piece of legislation. Senator Dodd
and I thank both Senator Enzi and Senator Kennedy for breaking ranks,
making sure we could move this as a separate piece of legislation,
apart from the overall reauthorization of NIH.
I want to say to the leader, as Senator Enzi said, we wouldn't be
here if it were not for your commitment to get this bill done. I know
Senator Reid, with whom I spoke just a few minutes ago, said: This is a
very important bill to me; this is something I want to see done. We
worked through the bumps here right at the end to get that done thanks
to you, our two leaders.
Up until the very end this has been a difficult process, but we are
here. Having worked on a lot of bills, I have been very blessed in the
time that I have been here. I have had my share of legislative
successes and bills I have worked on and worked hard on to make a
difference. I can't think of any piece of legislation that I will feel
better about as I reflect back on what I have accomplished here than
what we have done tonight.
People who are dealing with children with autism are a special group
of people. Senator Dodd laid that out very eloquently. They are a
special group of people who are, in many cases, just more determined to
be able to solve this enigma that is in their family, this disorder
about which they just can't seem to get the answers they need.
I always say when I meet with a group of autistic kids and their
parents, the commonality in every one of those meetings is tears. In
most cases, we are talking to parents who are very, very stressed out
and really sort of at their wits end as to how to grapple with this
problem. Tonight, hopefully, we will begin the process of drying those
tears and creating hope for a whole group of Americans and their

[[Page S8771]]

families who deserve better answers than what we are getting from the
medical community today.
One final note. I want to say that Senator Dodd, I think, referred to
Deirdre Imus as the flame that just burned. I say, then her husband is
the torch that is burning many places--many parts of our body at times,
in getting this legislation through. Don Imus deserves, certainly, his
credit for taking this issue on in a very public way and, because of
what he does on the radio, increasing public awareness about this
disorder and making a contribution to this effort that we are seeing
successful tonight. But also the effort improving awareness of this
order.

I am happy to yield to Senator Dodd.
Mr. DODD. Mr. President, I suspect that Don Imus is so dedicated to
raising awareness of this issues because of the work of his wife. That
is why he does this, more than anything else. We are delighted to have
both of their support and commitment to this important issue.
On my own staff, I wish to thank Jim Fenton, Tamar Magarik, and
Elizabeth Hoffman; Jen Vesey with Senator Santorum; Shana Christrup and
Steve Northrup of Chairman Enzi's staff, and Caya Lewis with Ranking
Member Kennedy's staff.
We have had some wonderful people on all sides work on this, and I am
pleased to recognize them and add their names to the Record.
The PRESIDING OFFICER. The Senator from Pennsylvania.
Mr. SANTORUM. Mr. President, I earlier thanked my staff member, Jen
Vesey, and I want to reiterate that. I really cannot tell you how much
credit she deserves for this legislation and the enormous amount of
time she spent in pulling this altogether. As Senator Dodd mentioned
staff again, I thought it was important for everyone who is working out
there in the autism community to understand what a champion you have in
Jen Vesey, who is on my staff.
I ask unanimous consent that Senator Chambliss and Senator Thune be
added as cosponsors to the legislation.
The PRESIDING OFFICER. Without objection, it is so ordered.
Mr. SANTORUM. Mr. President, I understand there is an amendment at
the desk. Let me explain what this amendment does before I ask consent
it be adopted and the bill be passed, because I know people are going
to hear that this bill passed and passed with an amendment and they are
going to wonder what the amendment is and whether this does anything to
change the bill.
The amendment is as a result of one of the bumps that we ran into
tonight, trying to get this bill passed unanimously. It is not easy to
get the Senate to do anything unanimously, particularly anything
complex, and this is a very lengthy piece of legislation that has a lot
of complexity to it.
We had one issue brought up by a Member with respect to the increase
in the amount of authorization for research. That Member thought that
number was excessive and was going to object to the consideration of
the bill tonight unless we were able to do something about that
authorization number. In order to get the legislation adopted--because,
again, there would have been objection tonight and that objection would
have carried into the fall, and with a very short timeframe the
likelihood of that bill being able to pass this fall and be considered
by the House and then passed and sent to the President would have been
highly unlikely--so I was able to negotiate with this Senator to reduce
the level of authorization, the increase, from $100 million in the area
of research in the NIH to $200 million--which is what the bill calls
for--from $100 million to $150 million. Instead of the research going
up $20 million a year for 5 years up to $200 million in the final year,
it will go up at $10 million a year to $150 million in the final year.
Again, still a sizable increase.
It is a 50 percent increase in funding over 5 years in the
authorization. If you look at what we are doing here in the Senate
these days, we are not increasing funding for many programs at 50
percent. So it is not all we had hoped, not all we had wanted, but it
is better than nothing. Unfortunately, with the late hour of this bill
being brought up, nothing was a real alternative and not a pleasant
one.
As a result, that is the amendment we will be considering here in a
moment. After the amendment is adopted, then the bill will be
passed. We will send the bill over to the House and hope that when the
House returns in September and is willing to bring up this legislation,
pass it as it is, and send it on to the President so we can get moving
on finding a cure for the autism spectrum disorder.

Mr. ENZI. Mr. President, I rise today in support of S. 843, the
Combating Autism Act. I am pleased to note that the Senate will pass
this bill today.
This legislation, which was recently reported out of the Senate
Health, Education, Labor, and Pensions Committee, focuses on expanding
autism spectrum disorder research and coordination at the National
Institutes of Health, NIH. It also increases awareness of autism
spectrum disorder and its symptoms through the Centers for Disease
Control and Prevention, CDC. Additionally, the bill integrates our
various health, education, and disability programs that serve
individuals and families affected by autism spectrum disorder and
ensures that the community of people affected by this disorder have a
voice in all of this.
No one knows exactly how many individuals are affected by autism
spectrum disorder, but some studies suggest it could be as high as 1
out of every 166 American individuals.
But there are many things we do know about autism spectrum disorder.
We know we need to begin intervention as early as possible to help
individuals with autism spectrum disorder reach their full potential.
And given the importance of early intervention, we need further
research into the possible causes of autism spectrum disorder.
We need to understand more about the various forms of autism spectrum
disorder to improve our ability to provide the right kinds of
intervention and support. And, we need to provide better integration of
the health, education, and disability programs already available to
meet the increased demand for these interventions, supports and
services.
I believe the ``Combating Autism Act'' is an important step toward
addressing these needs and finding some solutions that will improve the
lives of individuals and families whose daily lives have been turned
upside down by autism spectrum disorder.
This bill is the result of a tremendous amount of work across party
lines. I want to thank the original bill cosponsors, Senators Santorum
and Dodd for introducing this legislation and for working with me to
fine-tune it. I would also like to express my deep appreciation and
thanks to the ranking member, Senator Kennedy, for his hard work during
this process. Of course, in providing thanks to the members, I would be
remiss if I did not mention the staff. Specifically, I want to thank
Jen Vesey with Senator Santorum; Jim Fenton, Ben Berwick, Tamar
Magarik, and Elizabeth Hoffman with Senator Dodd, and Caya Lewis with
Senator Kennedy's office, as well as my staff--Steve Northrup, Aaron
Bishop, Tec Chapman, Martina Bebin, and Shana Christrup.
I also want to thank the various groups and individuals who work on
behalf of individuals and families affected by autism spectrum
disorder. I appreciate the way in which this community of advocates has
come together to work with me and my colleagues on this. If they had
not worked together so well--with each other and with us as our
Committee worked on this bill--I doubt we would be here today.
Mr. SANTORUM. Mr. President, first let me express my sincere
gratitude to Chairman Enzi and your staff for investing so much time
and thoughtful effort in this important legislation, as well as thank
Senators Dodd and Kennedy, and their staffs. Few things are more
important than the health and happiness of our Nation's children, and
the Combating Autism Act will go a long way to helping those diagnosed
with autism live up to their full potential. We have a tremendous
opportunity to make a real difference in the lives of children with
autism and their families. This Federal investment will lead to better
understanding of autism, increase awareness, diagnosis and
intervention--all things that will make a profound impact on families
struggling for answers and hope.
Autism raises complex and emotional issues. All of us who worked so
hard on

[[Page S8772]]

this legislation sought to keep the primary focus of the bill on autism
research and awareness. However, in addressing the key issues within S.
843, some have raised concerns regarding a potential link between
vaccines, vaccine components, such as thimerosal, and autism. Can the
Chairman clarify his position on this issue?
Mr. ENZI. Mr. President, I am happy to do so. In 2004 the Institute
of Medicine's Immunization Safety Review Committee concluded that the
body of epidemiological evidence ``favors rejection of a causal
relationship between the MMR vaccine and autism spectrum disorder'' and
also ``favors rejection of a causal relationship between thimerosal-
containing vaccines and autism spectrum disorder.'' The IOM committee
also found that ``potential biological mechanisms for vaccine-induced
autism spectrum disorder that have been generated to date are
theoretical only.''
However, the IOM committee also acknowledged that ``[a]bsent
biomarkers, well-defined risk factors, or large effect sizes, the
committee cannot rule out, based on the epidemiological evidence, the
possibility that vaccines contribute to autism spectrum disorder in
some small subset or very unusual circumstances.'' The IOM committee
also noted that ``experiments showing effects of thimerosal
on biochemical pathways in cell culture systems and showing
abnormalities in the immune system or metal metabolism in people with
autism spectrum disorder are provocative,'' and suggested that ``the
autism spectrum disorder research community should consider the
appropriate composition of the autism spectrum disorder research
portfolio with some of these new findings in mind.''

I agree with the IOM committee's recommendation that ``available
funding for autism spectrum disorder research be channeled to the most
promising areas.'' The HELP Committee reported this bill without making
the determination for the autism spectrum disorder research community
of what are the ``most promising areas'' for investigation. Instead,
the bill reported by the HELP Committee contemplates key research
activities, including environmental research, that focus on a broad
range of potential contributing factors, with meaningful public
involvement and advice in setting the research agenda.
However, I want to be clear that, for the purposes of biomedical
research, no research avenue should be eliminated, including biomedical
research examining potential links between vaccines, vaccine
components, and autism spectrum disorder. Thus, I hope that the
National Institutes of Health will consider broad research avenues into
this critical area, within the Autism Centers of Excellence as well as
the Centers of Excellence for Environmental Health and Autism. No stone
should remain unturned in trying to learn more about this baffling
disorder, especially given how little we know.
I also want to note that this broad statement is appropriately
limited to biomedical and not epidemiological research. Although S. 843
provides for specific centers of excellence to examine epidemiological
issues related to autism spectrum disorder, there is currently no
expectation that the Centers for Disease Control and Prevention should
further pursue additional epidemiological research regarding the link
between autism spectrum disorder and vaccines or vaccine components,
unless new biomedical research provides additional information about
specific at-risk subpopulations. At this point, given what we know and
what has already been done in this area, no new epidemiological
research is required.
Mr. SANTORUM. I agree with the comments of the chairman. I thank him
for clarifying, and again for all of his hard work on this legislation.
Mr. KENNEDY. I also agree with the comments of the chairman.
Mr. DODD. As my colleagues are well aware, the prevalence of ASD in
the U.S. is 10 times greater than a decade ago. In my own State of
Connecticut, ASD diagnoses have increased by close to 1100 percent
since 1993. What these numbers tell us is that ASD diagnoses are rising
at truly alarming rates and we simply must provide more answer to all
those affected by this devastating condition.
We must also create a larger pool of experts in the field so that
families can be directed to nearby specialty clinics for confirmation
of diagnosis, care and services. Waiting lists at the Nation's top
developmental disability centers are as long as 2 to 3 years, and
families are often forced to travel far from home to receive needed
care and to participate in clinical research studies. Increasing the
number of trained physicians and allied health professionals who can
provide a medical home for individuals with ASD will enable all those
affected to receive the optimal and timely care that they deserve.
It is my sincere hope and expectation that by expanding the federal
response to ASD and other developmental disabilities through the
Combating Autism Act, we will see improved research on ASD, including
its causes, and families across America will get the services they so
urgently need. In our search for the cause of this growing
developmental disability, we should close no doors on promising avenues
of research. Through the Combating Autism Act, all biomedical research
opportunities on ASD can be pursued, and they include environmental
research examining potential links between vaccines, vaccine components
and ASD.
Mr. SANTORUM. I ask unanimous consent that the amendment at the desk
be agreed to, the committee-reported amendment, as amended, be agreed
to, the bill, as amended, be read a third time and passed, and the
motion to reconsider be laid upon table and that any statements
relating to the bill be printed in the Record.
The PRESIDING OFFICER (Mr. Burr). Without objection, it is so
ordered.
The amendment (No. 4878) was agreed to, as follows:

On page 39, line 20, strike ``2007'' through page 40, line
5 and insert:
``(A) $68,000,000 for fiscal year 2007, $74,500,000 for
fiscal year 2008, $81,000,000 for fiscal year 2009,
$87,500,000 for fiscal year 2010, and $94,000,000 for fiscal
year 2011, to carry out subsections (a), (b), and (d);
``(B) $24,000,000 for fiscal year 2007, $30,500,000 for
fiscal year 2008, $37,000,000 for fiscal year 2009,
$43,500,000 for fiscal year 2010, and $50,000,000 for fiscal
year 2011, to carry out subsection (c)(1); and
The committee amendment in the nature of a substitute, as amended,
was agreed to.
The bill was ordered to be engrossed for a third reading, was read
the third time, and passed, as follows:

S. 843

Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the ``Combating Autism Act of
2006''.

SEC. 2. ACTIVITIES TO IMPROVE AUTISM-RELATED RESEARCH.

Section 409C of the Public Health Service Act (42 U.S.C.
284g) is amended to read as follows:

``SEC. 409C. AUTHORITY OF THE DIRECTOR OF THE NATIONAL
INSTITUTES OF HEALTH RELATING TO AUTISM.

``(a) Strategic Plan for Autism Research.--
``(1) In general.--The Secretary, acting through the
Director, shall develop and implement a strategic plan for
the conduct and support of research related to autism
spectrum disorder.
``(2) Requirements.--The strategic plan developed under
paragraph (1)--
``(A) shall--
``(i) be updated annually;
``(ii) take into account the research recommendations of
the Interagency Autism Coordinating Committee under section
399CC; and
``(iii) using professional judgment, outline the proposed
budgetary requirements of the strategic plan, including
specific funding expectations for continued multi-year
program activities, as well as new and complementary program
activities, subject to the availability of appropriations;
and
``(B) may include investigator-initiated research.
``(3) Report.--Not later than April 1, 2008, and annually
thereafter, the Secretary, acting through the Director, shall
prepare and submit to the appropriate committees of Congress
a report that contains--
``(A) the strategic plan under paragraph (1) that will be
applicable to the upcoming fiscal year; and
``(B) a description of the actual dollar expenditures for
autism spectrum disorder during the previous fiscal year.
``(b) Expansion, Intensification, and Coordination of
Activities.--The Secretary, acting through the Director,
shall, subject to the availability of appropriations, expand,
intensify, and coordinate the activities of the National
Institutes of Health with respect to autism spectrum
disorder.
``(c) Centers of Excellence.--
``(1) Autism centers of excellence.--
``(A) In general.--The Secretary, acting through the
Director, shall, subject to the availability of
appropriations, award grants

[[Page S8773]]

or contracts to public or nonprofit private entities to
assist such entities in paying all or part of the costs of
planning, establishing, improving, and providing basic
operating support for centers of excellence concerning
research on autism spectrum disorder.
``(B) Research activities.--A center of excellence that
receives funding under this paragraph shall conduct basic and
clinical research into autism spectrum disorder. Such
research shall--
``(i) be conducted in the fields of developmental
neurobiology, genetics, epigenetics, pharmacology, nutrition,
immunology, neuroimmunology, neurobehavioral development,
endocrinology, gastroenterology, psychopharmacology, or
toxicology; and
``(ii) include investigations into the causation, diagnosis
or rule out, early detection, prevention, services, supports,
or intervention of autism spectrum disorder.
``(C) Services.--
``(i) In general.--A center of excellence that receives
funding under this paragraph may expend amounts provided
under a grant or contract under such paragraph to carry out a
program to make individuals aware of opportunities to
participate as subjects in research conducted by the center.
``(ii) Referrals and costs.--A program carried out under
clause (i) may, in accordance with such criteria as the
Director may establish, provide to the subjects described in
such clause, referrals for health and other services and
reimbursement of care for individuals as are required for
such research.
``(iii) Availability and access.--The extent to which a
center of excellence that receives funding under this
paragraph can demonstrate the availability of and access to
clinical services shall be considered by the Director in
making decisions concerning the awarding of grants or
contracts to applicants that meet the scientific criteria for
funding under this section.
``(D) Coordination of centers of excellence.--The Director
shall provide for the appropriate coordination of information
among centers of excellence that receive funding under this
paragraph and ensure regular communication between such
centers.
``(E) Organization.--A center of excellence that receives
funding under this paragraph shall use the facilities of a
single institution, or be formed through a consortium of
cooperating institutions, that meets such requirements as may
be required by the Director.
``(F) Duration.--The term of a grant or contract awarded
under this paragraph shall not exceed a period of 5 years.
Such period may be extended for 1 or more additional periods
not exceeding 5 years if the operations of the center of
excellence involved have been reviewed by an appropriate
technical and scientific peer review group established by the
Director and the group has recommended to the Director the
extension of such period.
``(G) Geographic diversity.--The Director shall consider
geographic diversity in awarding centers of excellence.
``(2) Centers of excellence in environmental health and
autism.--
``(A) In general.--The Director shall, subject to the
availability of appropriations, award grants or contracts to
public or nonprofit private entities to pay all or part of
the cost of planning, establishing, improving, and providing
basic operating support for centers of excellence regarding
environmental health and autism spectrum disorder.
``(B) Research.--A center of excellence established under
this paragraph shall conduct basic and clinical research of a
broad array of environmental factors that may have a possible
role in autism spectrum disorder.
``(C) Coordination and organization.--The Secretary, acting
through the Director of NIH, shall apply to the centers under
this paragraph the same requirements concerning coordination,
reporting, and organization as the requirements applied to
the centers of excellence under subparagraphs (D), (E), (F),
and (G) of paragraph (1).
``(d) Collection and Storage of Data.--
``(1) In general.--The Secretary, acting through the
Director and in coordination with the Director of the Centers
for Disease Control and Prevention, shall, subject to the
availability of appropriations, establish and provide funding
for mechanisms and entities that provide for the collection,
storage, coordination, and public availability of data that
is collected by the centers of excellence under this section,
under section 399AA(b), and under section 409C(c) and, to the
extent possible, data generated from public and private
research partnerships. In establishing such mechanisms and
entities, the Secretary--
``(A) shall ensure that there is data sharing among autism
spectrum disorder researchers; and
``(B) may utilize existing facilities.
``(2) Facilitation of research.--
``(A) Establishment of program.--The Secretary shall
establish a program under which samples of tissues and
genetic and other biological materials that are of use in
research on autism spectrum disorder are donated, collected,
preserved, and made available for such research.
``(B) Accepted scientific standards.--The program
established under paragraph (1) shall be--
``(i) carried out in accordance with accepted scientific
and medical standards for the donation, collection, and
preservation of such samples; and
``(ii) conducted so that the tissues and other materials
saved, as well as any database compiled from such tissues and
materials, are available to researchers at a reasonable cost
and on an expedited basis.
``(e) Consolidation.--The Secretary, acting through the
Director, may consolidate program activities under this
section if such consolidation would improve program
efficiencies and outcomes.
``(f) Authorization of Appropriations.--
``(1) In general.--There is authorized to be appropriated--
``(A) $68,000,000 for fiscal year 2007, $74,500,000 for
fiscal year 2008, $81,000,000 for fiscal year 2009,
$87,500,000, for fiscal year 2010, and $94,000,000 for fiscal
year 2011, to carry out subsections (a), (b), and (d);
``(B) $24,000,000 for fiscal year 2007, $30,500,000 for
fiscal year 2008, $37,000,000 for fiscal year 2009,
$43,500,000 for fiscal year 2010, and $50,000,000 for fiscal
year 2011, to carry out subsection (c)(1); and
``(C) $6,000,000 for fiscal year 2007, $7,500,000 for
fiscal year 2008, $9,000,000 for fiscal year 2009,
$10,500,000 for fiscal year 2010, and $12,000,000 for fiscal
year 2011, to carry out subsection (c)(2).
``(2) General usage.--Of the amounts appropriated under
subparagraphs (B) and (C) of paragraph (1), not to exceed 5
percent of such amounts may be utilized by the National
Institutes of Health for administrative and other expenses.
``(g) Sunset.--This section shall not apply after September
30, 2011.''.

SEC. 3. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH
PROGRAM.

(a) In General.--Title III of the Public Health Service Act
(42 U.S.C. 241 et seq.) is amended by adding at the end the
following:

``PART R--PROGRAMS RELATING TO AUTISM

``SEC. 399AA. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND
RESEARCH PROGRAM.

[[Page S8774]]

``(c) Federal Response.--The Secretary shall coordinate the
Federal response to requests for assistance from State
health, mental health, and education department officials
regarding potential or alleged autism spectrum disorder or
developmental disability clusters.
``(d) Definitions.--In this part:
``(1) Other developmental disabilities.--The term `other
developmental disabilities' has the meaning given the term
`developmental disability' in section 102(8) of the
Developmental Disabilities Assistance and Bill of Rights Act
of 2000 (42 U.S.C. 15002(8)).
``(2) State.--The term `State' means each of the several
States, the District of Columbia, the Commonwealth of Puerto
Rico, American Samoa, Guam, the Commonwealth of the Northern
Mariana Islands, the Virgin Islands, and the Trust Territory
of the Pacific Islands.
``(e) Authorization of Appropriations.--To carry out this
section, there is authorized to be appropriated, $15,000,000
for fiscal year 2007, and such sums as may be necessary for
each of fiscal years 2008 through 2011.
``(f) Sunset.--This section shall not apply after September
30, 2011.

``SEC. 399BB. AUTISM EDUCATION, EARLY DETECTION, AND
INTERVENTION.

[[Page S8775]]

autism spectrum disorder or other developmental disabilities,
develop guidelines for those interventions, and disseminate
information related to such research and guidelines.
``(g) Authorization of Appropriations.--To carry out this
section, there is authorized to be appropriated, $32,000,000
for fiscal year 2007, $37,000,000 for fiscal year 2008,
$42,000,000 for fiscal year 2009, $47,000,000 for fiscal year
2010, and $52,000,000 for fiscal year 2011, of which--
``(1) $5,000,000 shall be made available in each fiscal
year for activities described in subsection (c); and
``(2) $3,000,000 shall be made available in fiscal year
2007, $6,000,000 in fiscal year 2008, $9,000,000 in fiscal
year 2009, $12,000,000 in fiscal year 2010, and $15,000,000
in fiscal year 2011, for activities described in subsection
(f).
``(h) Sunset.--This section shall not apply after September
30, 2011.

``SEC. 399CC. INTERAGENCY AUTISM COORDINATING COMMITTEE.

``SEC. 399DD. REPORT TO CONGRESS.

Mr. SANTORUM. I thank the Chair.
For the information of those who might be listening, the bill is now
passed and we are off to the House with great hope that this fall will
bring us successful passage there and final action by the President
sometime in September.
I yield the floor.

____________________